The ME Association (MEA) has invested £850,000 in the UK ME/CFS Biobank (UKMEB) since it was established in 2011 and continues to fund its operational costs.
The Cure ME Steering Group meets quarterly to discuss matters relating to the UKMEB and its most recent meeting was on 19 March. The CureME research team are based at the London School of Hygiene & Tropical Medicine, with the clinical team within the Department of Clinical Research, while lab colleagues work within the Department of Life Sciences at Brunel University.
The team is overseen by a Steering Committee that includes researchers, partner charities (The MEA and MERUK), and people with lived experience. It is chaired by Dr Charles Shepherd from the MEA.
Matters Arising
Dr Shepherd:
- provided an update on the application to The Oddfellows for a hand-grip-strength study
- noted that Ashley Dalton has taken over as Parliamentary Under-Secretary of State for Public Health and Prevention. He also mentioned that the publication of the Delivery Plan has been delayed and is now expected to be released by the end of June. Everyone was disappointed that there would be no additional funding for ME/CFS research, as many had hoped for something like the dementia plan from David Cameron's tenure. The new minister is aware of the feeling of disappointment.
- also mentioned that NHS England has conducted a stock-take of specialist services and Long Covid clinics, though the results are not expected to be published. He understands someone is planning to submit a FOI request to obtain the findings.
Biobanking, Researcher outreach and future release plans of stored samples
Caroline Kingdon:
- shared the progress on applications to access samples from the UK MEB
- stressed the need to shift focus from sample collection to utilising the 30,000+ stored samples, which are increasingly costly to maintain. The long-term quality of these samples was discussed; the lab team were reassuring and regular checks will be introduced
Research grants, progress reports and grant applications
Dr Jackie Cliff:
- reported good progress on the proposal involving Fatima Labeed and Mike Hughes which will be submitted very soon (this is follow-on work from the study funded by MEA and ME Research UK on electrophysiological properties of cells)
- also updated the group on the HHV6B project which she is leading with Eliana Lacerda (funded by US NIH/NIAID). This work follows-on from their pilot study which was published in 2021 (Lee et al., 2021). The project is progressing very well, with the first phase completed, and Aim 2 well underway and they are about to start on Aim 3 which will look at collecting 30 samples from Long Covid patients.
Promoting UKMEB
Ella Abken:
- There will be a competition shortly for researchers to win free samples
- A video aimed at researchers is currently being produced and will be available on the CureME website
- The team also plans to promote UKMEB at conferences in Berlin and at the Young Emerg symposium.
Any Other Business
- Ella reported on the CureME webinar series, with the second due to take place at the end of May/Beginning of June with Luis Nacul as a guest.
- Dr Shepherd also reported the MEA would continue to fund the clinical trial into low-dose Naltrexone (LDN) in Canada, with the legalities now complete and an announcement here
The Steering Group will meet again on Wednesday 18th June, and will provide an update shortly afterwards.
About CureME
CureME is at the forefront of participatory epidemiological, clinical and laboratory research into Myalgic Encephalomyelitis (ME/CFS) in the UK.
Its research has focused on improving recognition, diagnosis and treatment of ME/CFS, and led to the creation of the UK’s first ME/CFS Biobank (UKMEB) – which is open to external researchers across the globe. The ME Association and it’s Ramsay Research Fund financially support the UKMEB and has done since it was established in 2011. It currently costs around £80,000 each year to keep the UKMEB operational.
Biological samples and clinical data from people with ME/CFS and MS (as well as healthy controls) are held in frozen storage at the Royal Free Hospital, while the Biobank data is stored in a secure database at the London School of Hygiene & Tropical Medicine.
Over 30,000 aliquots of blood have been collected using rigorous and consistent scientific protocols. These samples are used by the UKMEB team and other researchers in the UK and by an increasing number overseas.
More Information
- Leading UK Charity invests in Canadian trial of drug treatment for ME/CFS and Long Covid | April 2, 2025
- MEA and MERUK Research: Explaining Electrophysiological Properties of Cells in Health and Disease | August 15, 2024
- The ME Association and ME Research UK announce funding for a study that aims to create a diagnostic test for ME/CFS | October 30, 2023
- Salivary DNA Loads for Human Herpesviruses 6 and 7 Are Correlated with Disease Phenotype in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | August 6, 2021